Nevin Isn’t Letting Stage 4 Hodgkin Lymphoma Define Him
Nevin’s story is one of resilience, self-advocacy, and navigating life’s unexpected turns having been diagnosed with stage 4 Hodgkin lymphoma. His experience underscores the importance of trusting your instincts when it comes to your health.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
It all began with a relentless cough that didn’t improve even after Nevin quit smoking. Then came the intense itchiness, feeling like bugs crawling under his skin, and a persistent fatigue that made simple tasks overwhelming. Doctors thought he had asthma and eczema, but Nevin knew something was off. It wasn’t until he discovered a hard lump on his neck before his best friend’s wedding that everything changed. An urgent care doctor quickly connected the dots, leading to tests and a biopsy confirming stage 4 Hodgkin lymphoma.
Through all the hospital visits, treatments, and life adjustments, like having to leave his job in Los Angeles and move back home, Nevin remained grounded. He found strength in self-advocacy, pushing for answers when the initial diagnoses didn’t sit right. Mental health became a priority, as did surrounding himself with supportive people. Even on tough days, he focused on staying active and cherishing his good days.
Nevin emphasizes not letting cancer define who you are. The activities you love, the dreams you chase — they’re still part of you. Although his treatments brought significant side effects like nausea, dizziness, and even red-colored urine, Nevin’s mindset stayed strong. He capitalized on his good weeks, maintained strong connections with loved ones, and kept hope alive.
Nevin also confronted tough topics like financial concerns, survivorship, and fertility, grappling with the possibility of not being able to have biological children post-chemo. It was a reminder of life’s unpredictability, but also of the privilege of choice, even when options are limited.
Nevin’s stage 4 Hodgkin lymphoma story is a testament to the power of hope, self-advocacy, and community. It’s about facing life head-on, even when the cards you’re dealt aren’t ideal. His experiences resonate with anyone navigating serious health challenges, highlighting the universal need to listen to your body, speak up, and hold on to what makes you you.
Watch Nevin’s video to find out more about:
How a simple cough led to his life-changing stage 4 Hodgkin lymphoma experience.
Why trust in your gut can be your best medical advocate.
How cancer doesn’t have to affect one’s self-identity.
The emotional challenges of putting your dreams on pause for health.
Nevin’s candid reflections on fertility, mental health, and hope.
Name:
Nevin S.
Age at Diagnosis:
28
Diagnosis:
Hodgkin Lymphoma
Staging:
Stage 4
Symptoms:
Bad cough
Severe skin itch, especially on the legs
Extreme fatigue and dizziness
Night sweats
Lumps in the neck and armpit
Treatments:
Surgery: lymphadenectomy
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Supporting Someone with Cancer: Karina & Jesse’s Myelofibrosis Care Partner Story
When Karina was diagnosed with myelofibrosis during pregnancy, her husband became her anchor, learning how to support someone with cancer. This is their story of how he navigated the uncertainty, advocated for her care, and found strength in the face of the unknown. Together, they faced each new challenge, showing the vital role care partners play in the cancer journey.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Karina’s symptoms included excruciating abdominal pain, fatigue, anemia, and neuropathy. But she was determined to get on with her life. She balanced her health challenges with pursuing a nursing career, caring for her family, and maintaining a positive outlook thanks to her spirituality. Jesse’s role as her myelofibrosis care partner was crucial. He didn’t just provide emotional support, but also became her advocate, researcher, and biggest cheerleader.
As Karina’s condition progressed, it became evident that she needed to have a stem cell transplant. She and Jesse struggled to find a match until their son, David, turned out to be her perfect donor. When they discovered this, they were filled with profound gratitude and hope.
Post-transplant life brought its own set of challenges. Accepting the new version of herself wasn’t easy for Karina, but her strength lay in accepting change with grace. Together, Karina and Jesse advocate for the power of mindset in dealing with life’s toughest hurdles, the importance of supportive care partnerships, and the urgent need for minority representation in stem cell donor registries.
Read Karina and Jesse’s story and watch the video for more on:
How her faith helped turn her cancer diagnosis into a story of hope.
The life-saving hero who was living under Karina’s roof all along.
How Jesse’s role as Karina’s myelofibrosis care partner redefined love and support.
Why increasing diversity in bone marrow registries can save more lives — Karina’s heartfelt plea.
Her courageous acceptance of change after her transplant.
Name:
Karina H.
Age at Diagnosis:
34
Diagnosis:
Myelofibrosis (MF)
Mutation:
Janus kinase 2 (JAK2) gene
Symptoms:
Severe abdominal pain in left quadrant
Abnormal blood work
Treatments:
Chemotherapy
Stem cell transplant
Thank you to Karyopharm Therapeutics for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I underwent a lot of sadness, hardship, and difficulty, and all that entails. But I pressed forward in hope for sure.
There was a lot of hope that just kept me going all those years.
About Us
Karina: Hi, I’m Karina. My friends and family describe me as very constant. I’m very faithful, very devout, and also very resilient. I’ve always been able to rise above what I’ve been facing.
Jesse: Hey, I’m Jesse. Most people would describe me as loyal. If anyone needed anything from me, I would drop everything and help them out. That’s me in a nutshell.
How Our Myelofibrosis Care Partner Story Began
Karina: In December 2016, I had an unexpected miscarriage. I went through the process of losing my child, and then started to move on with my life.
I went back to school. At the time, I was doing clinical rotations as part of the licensed vocational nurse (LVN) program. In April, I was on one rotation. I suddenly started having an excruciating left upper quadrant abdominal pain that wouldn’t go away.
The pain kept me up that night. It felt like I had a bowling ball inside my abdomen. I had to go to urgent care, where they did my bloodwork. They determined that my bloodwork was abnormal, alarmingly so — but they also found that I was pregnant again.
They told me, “These aren’t good numbers. We need to do a bone marrow biopsy right away.” But they also said, “We don’t know if you’re going to be able to carry this baby.”
I asked the doctor, “Are you sure we can’t wait until I have the baby? Is there anything else that we can do?” And he said, “No, this needs to happen immediately.” When I heard that, it was like I went into a fog.
Jesse: The baby was our biggest concern. Karina had miscarried some months before, as she mentioned. And of course, never in a thousand years did we think that she was going to get diagnosed with something as serious as this.
They told me, “These aren’t good numbers. We need to do a bone marrow biopsy right away.”
But they also said, “We don’t know if you’re going to be able to carry this baby.”
Karina’s Myelofibrosis Diagnosis and How We Took It
Jesse: The first doctor went straight to the point. She told Karina, “I’m not going to sugarcoat this. You’ve got myelofibrosis. It’s a rare kind of cancer. You’ve got ten years to live.”
The second doctor, though, went, “Whoa, we don’t know if it’s ten just yet. It might be, considering your age and where you are right now in its progression.”
But it didn’t matter at that point. I think I spaced out when the first doctor mentioned ten years. I don’t think we got anything out of the rest of the conversation.
We left the hospital without saying a word, and when we got back to our car, we just looked at each other and started bawling. And then we went, “Oh, we have so many questions about the baby and the cancer.”
Karina: I really couldn’t believe what the doctors were telling us. I mean, it was definitive, we knew that — I did have a bone marrow biopsy after all. But like in the movies where things go radio silent, after I heard the diagnosis, I couldn’t process things any longer.
I was hearing about donors and transplants and being told, “We’re just going to have to see how this pregnancy goes,” but it was all in little bits and pieces. I couldn’t gather myself.
Karina’s Symptoms Progressed
Karina: We found that the majority of the pain I was experiencing was because of my spleen. It would put tremendous pressure on my left and touch off persistent pain that would radiate to my back and shoulder. Because of it, I had to sleep on my right side for years.
I also discovered that I was anemic and began to feel significant fatigue. So I needed to undergo blood transfusions. And then, of course, the mental impact of discovering my pregnancy and being diagnosed with cancer amplified my fatigue.
I also began to experience neuropathy. I suffered from a burning feeling in my fingers and toes. It felt like someone had taken a torch to them. I remember being in a store and having to step outside it and remove my shoes because I thought I might have ants in them that were biting me.
Jesse looked up and researched all these things I was experiencing. He told me, “We’re going to get a second opinion at MD Anderson in Houston.”
Jesse: As a husband, I got into this fight-or-flight mode. I thought, “I don’t want to lose her. What do I do, what can I do? I’m not a doctor, I don’t know what we’re dealing with, and neither does she.” So we needed to educate ourselves.
The one thing that we kept hearing over and over was “We know what myelofibrosis is, but we’ve never dealt with a pregnant myelofibrosis patient.” Hearing that from a doctor didn’t sit well with me.
Karina: The doctors orchestrated my plan of care. I ended up having a local doctor, but at the same time, I also had someone in Houston who monitored my care.
Jesse: In Houston, they told us, “You’re going to be able to have the baby,” which was wonderful to hear. They said, “We’re going to enter a watch and wait phase,” meaning they would closely monitor Karina without treatment until any symptoms arise.
They added, “You’ll be able to nurse the baby, too. Once symptoms start manifesting themselves and we’re ready, we’re going to aggressively treat this cancer.”
… they told us, “You’re going to be able to have the baby,” which was wonderful to hear.
How We Took Back Control After the Diagnosis
Karina: We learned more about myelofibrosis. We found out that it’s a kind of chronic leukemia and it also is a kind of cancer called a myeloproliferative neoplasm (MPN).
Patients are literally in a state where they’re watching and waiting for symptoms to manifest. They don’t have control over when they stop taking certain treatments, like oral chemotherapy and blood transfusions, and certainly not when they start experiencing symptoms, such as night sweats and bone and spleen pain.
After I was diagnosed, I waited two years before I shared what I had with people. Firstly, because I didn’t look sick, and unfortunately, too many people stereotype cancer patients as being without hair, looking frail and sick, and so on.
I had all my hair, looked healthy, and acted healthy, too. From day one, I wanted my kids to see me as a strong mom who could still get up and get things done, continue to work, take them to and fetch them from school, and so on.
I not only managed that with the help of Jesse my myelofibrosis care partner, but also ensured that my spirit wasn’t shaken and that I had control of how my mindset was going to be. Because in the watch and wait phase, I was determined to stay in sync with my faith and my conviction that I was going to smile during the storm.
Being in that watch-and-wait phase helped me build a lot of resilience. I needed to be patient with how long my treatment was going to take. At the time, I had no idea that it would be six long years later that I would have my transplant.
Hope Helped Us Build Up to Karina’s Stem Cell Transplant
Karina: That six-year period was long and heavy, and brought me to my knees. But I can summarize it as praising in the storm and staying so focused on that.
This was not going to be my forever. I was determined to do whatever I had to do to get through it.
I learned so much through trial and error. I suffered greatly from gastrointestinal tract issues and had to be in the restroom all the time. I was challenged emotionally, mentally, and physically — but never spiritually.
I continued going to MD Anderson, monthly or however often they asked me to come over. I pushed through my education to graduation, to being an LVN, to becoming a registered nurse, to finishing my Bachelor of Science in Nursing. I even managed to start my family nurse practitioner program before I had my stem cell transplant.
It was just so important to keep going. I underwent a lot of sadness, hardship, and difficulty, and all that entails. But I pressed forward in hope for sure.
There was a lot of hope that just kept me going all those years.
Jesse: I think over those six years, as Karina’s myelofibrosis care partner, it was important for me to constantly remind family, friends, and coworkers that Karina was sick. She mentioned earlier that she didn’t look sick. Of course, she was sick and on chemo — some pretty aggressive oral medicines to boot. But yes, she powered through. She was a trooper, a mom, a student, a wife who was herself so supportive of her family.
It was rough seeing her, because there were times when she wasn’t the same Karina. She was tired, and I had to accept that. And so my role for six years was to be her little battle buddy. Just to make sure that she was okay.
This was not going to be my forever.
I was determined to do whatever I had to do to get through it.
Preparing for Karina’s Transplant
Karina: I remember having a bone marrow biopsy again, locally this time. This is something that you need to do regularly as a myelofibrosis patient. When my bloodwork came in, the doctor flagged it and said that the results were bad and that I would need to be admitted immediately.
I was found to have internal bleeding. Moreover, they also determined that I had developed new mutations aside from the JAK2 mutation — mutations that could lead to me developing acute myeloid leukemia, which only a handful of myelofibrosis patients do.
That was when my doctors at MD Anderson stepped in and said, “It’s time for your stem cell transplant.” I was 39 years old, not getting any younger, but I still had a lot of fight in me. The doctor added, “We’ll still need to do this no matter what, but why wait until everything shuts down? Right now, you have what you need to get you through a transplant.”
My local doctor agreed, and so we started looking for a stem cell donor.
Our Son David Was Karina’s Stem Cell Donor
Karina: I found out the hard way how difficult it could be for a Latina like me, or for most other people from a minority group, for that matter, to be matched with a potential stem cell donor through the registry.
MD Anderson had me on a huge list, but Jesse said, “We can also advocate and go out there ourselves,” And he started orchestrating this big effort. Despite all these efforts, we still couldn’t find a donor.
MD Anderson came to us and said, “How about seeing if your son David is a match while we continue to search?” We asked David if he would be willing to undergo bloodwork to see if he could be my match. It was a no-brainer for him, and he underwent the bloodwork.
I got a phone call a little while afterwards. “We found your match. It’s David.”
I could never put into words what that phone call did for me. I had prayed so hard for this, and my prayer was answered. My donor was under my roof this whole time.
I remember telling him, “I’m so proud of you. Thank you so much. Whether this works or not, you’re my hero. I feel that you’re gifting me life.”
I did a graft of David’s cells. I’m in remission as a result.
I’m a living, breathing miracle because my son gifted me life.
I did a graft of David’s cells. I’m in remission as a result.
I’m a living, breathing miracle because my son gifted me life.
Life After Karina’s Transplant
Jesse: We’re going to grow old together, and we’re going to see our kids while we do so. We’re going to be grandparents.
We said that from the very beginning, when we went into transplant, our focus and mindset were: we’re going to get through this, we’ll be grandparents one day.
Karina: It was just tough because I always wanted to put my game face on, and it was really important for me not to worry you. I wanted to let you know: we’ve got this. I’m good.
There were many times I did feel that this was so difficult, and I didn’t know what was going to happen. And I knew that we were going to have to push through this as best we could.
Jesse: You’re my hero. I think that through all of this, I have a profound respect for everything that you’ve done through the entire cancer experience. I don’t think I’ve told you that enough. How proud I am of you and how you’ve powered through — continuing with your studies and with being a mom and with being a wife to a guy in the military who leaves all the time, and so I’m just so proud.
Karina: I would say that cancer and your experience being my myelofibrosis care partner amplified your good heart. I know you know this and that you’ve been so constant since day one. You’ve made all the promises you’ve kept. You’ve never failed me in any way. You’re God-centered. Even after all the changes I underwent due to my experience, including my appearance changing radically, you’ve been right with me.
I realized that we’re a divine orchestration that God set for us. I was so blessed and continue to be so blessed to have found this genuine love.
There were many times I did feel that this was so difficult, and I didn’t know what was going to happen. And I knew that we were going to have to push through this as best we could.
What We Want Other MPN Patients to Know
Karina: The most important thing that got me through is the power of the mindset. When we can’t control what our body is doing or what’s to come, when we’re uncertain of many things, the one thing we can control is our outlook about all of it.
And be easy on yourself. You’re going through so much. Love yourself during this time. Know how to facilitate a healthy mindset. It’s beneficial from beginning to end.
Our Advice for Other Caregivers and Care Partners
Jesse: Have a supportive mindset, but take care of yourself as well.
As a myelofibrosis care partner, or a care partner in general, you can sometimes feel that the world is on your shoulders. Seeing your significant other struggle and hurt isn’t easy. Not having all the answers is extremely difficult.
Education is one thing, but above all, have that positive mindset, and be supportive of the person that you love who is ill.
The most important thing that got me through is the power of the mindset…
… when we’re uncertain of many things, the one thing we can control is our outlook about all of it.
Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.
Thank you for sharing your story, Jesse and Karina!
Jay’s Path to Self-Advocacy and Healing Beyond Stage 4 Colon Cancer
Jay, an ex-athlete and father of three, was diagnosed with stage 4 colon cancer when he was 43. It all started with a symptom many might overlook: intermittent blood in his stool. But rather than dismiss it, Jay consulted his doctor. This touched off a series of medical tests. A CT scan and colonoscopy revealed a mass, marking the beginning of his life-altering experience.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Despite the shock, Jay embraced the process with resilience, navigating surgeries, chemotherapy, and countless medical procedures. His ordeal wasn’t just physical. The mental toll of living with stage 4 colon cancer reshaped his identity. He describes feeling like the sole survivor of a plane crash, grappling with survivor’s guilt as he watched fellow patients succumb to the disease.
This emotional weight prompted Jay to seek mental health support, helping him process not just survival but the loss and changes around him. He discovered that PTSD doesn’t only follow traumatic events like war — it can also stem from enduring a significant illness.
Throughout his treatment for stage 4 colon cancer, Jay focused on self-advocacy. He actively participated in treatment decisions and opted for advanced tests like the KRAS test to personalize his care. This approach to self-advocacy also meant embracing help from family and friends, acknowledging that support isn’t a sign of weakness but an integral part of healing. Jay noted that in his view, his wife and close family bore emotional burdens just as heavy as his own.
Physically, the long-term side effects of treatment linger. Jay describes his fatigue, altered taste sensations, and sensitivity to cold drinks— all reminders of what his body has been through. Yet, his mindset remains empowered. He stresses the importance of being active and cherishes the people who walked beside him, whether offering physical or emotional support.
Jay’s story isn’t just about surviving stage 4 colon cancer — it’s about what he did starting at his diagnosis. From the moment he received the news, Jay became a fierce advocate for his own care. He asked questions, sought out advanced testing, and made sure his voice was part of every treatment decision.
Watch Jay’s story and discover:
The importance of listening to your body
The role of self-advocacy in shaping a treatment path
The unexpected mental hurdles that can come from beating stage 4 colon cancer
Why accepting help is one of the strongest things you can do
How it might be possible to turn an unsettling diagnosis into a life of gratitude and self-awareness
Name:
Jay W.
Age at Diagnosis:
43
Diagnosis:
Colon Cancer
Staging:
Stage 4
Symptom:
Occasional presence of blood in stool
Treatments:
Chemotherapy
Surgery: installation of port and liver infusion pump, colectomy, hepatectomy, liver ablation, removal of liver infusion pump
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Intermittent appearance of blood in stool; occasional diarrhea; increase in bowel movement frequency; fevers and chills; fatigue; weight loss Treatments: Chemotherapy, surgery
Symptoms: Blood in stool, changes in bowel movements, pencil-thin stool, severe abdominal pain, loss of appetite, rapid weight loss, anemia, fatigue Treatment: Chemotherapy
The Power of Mindset and Family: Jen’s Stage 4B Diffuse Large B-Cell Lymphoma (DLBCL) Story
Jen was just 27 when she received the life-altering diagnosis of stage 4B DLBCL (diffuse large B-cell lymphoma) back in 2020. Her story began with what seemed like a stubborn, lingering cough that dragged on for four months. She brushed it off as the flu, but things escalated — coughing up blood, breathlessness, night sweats, and persistent abdominal pain. Swelling in her upper body, an unexplained lump near her collarbone, relentless itching, and sudden weight loss painted a worrying picture, but she remained unaware of the seriousness.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Her family grew increasingly concerned, especially her brother, who noticed some of her symptoms even before Jen herself did. Despite these red flags, the possibility of cancer never crossed their minds. It wasn’t until Jen struggled to walk a few steps without gasping for air that her family insisted that she see a respiratory doctor. Initial suspicions pointed to tuberculosis, but after hospitalization, scans revealed large tumors near her ovaries, sparking fears of ovarian cancer. A biopsy confirmed it was not ovarian cancer, but diffuse large B-cell lymphoma (DLBCL).
The emotional toll of her stage 4B DLBCL diagnosis was immense. Jen and her brother found solace in each other’s support, with heartfelt promises to face everything together. Despite the fear and shock, Jen’s courage shone through. She underwent six rounds of chemotherapy, immunotherapy, lumbar punctures, and an autologous stem cell transplant. The physical challenges and side effects were daunting — ulcers, hair loss, extreme fatigue, and the isolation required during her weakened immune state. Yet, her family’s constant presence became her anchor.
Jen’s mindset played a pivotal role. She refused to see herself as a cancer patient, treating her condition like any other health hiccup. She found a new sense of purpose, diving into spiritual exploration — learning tarot, energy healing, and yoga. Her experience with stage 4B DLBCL wasn’t just a chapter in her life; it transformed her perspective, teaching her to cherish experiences, emotions, and connections over material worries.
Watch Jen’s video and learn more about:
How her lingering cough turned out to be something far more serious.
Why Jen’s family secretly tracked her hair loss before she noticed.
The simple mindset shift that helped Jen through stage 4B DLBCL treatment.
The emotional moment when Jen realized she couldn’t walk to her own kitchen.
How being diagnosed with DLBCL led Jen to an unexpected spiritual awakening.
Name:
Jen N.
Age at Diagnosis:
27
Diagnosis:
Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
Stage 4B
Symptoms:
Coughing up blood-tinged phlegm
Whole-body itching
Night sweats
Lump near her collarbone
Upper body swelling and abdominal pain
Shortness of breath, incl. difficulty walking short distances
Inability to lie flat while sleeping
Rapid weight loss
Treatments:
Chemotherapy
Immunotherapy
Lumbar puncture
Autologous stem cell transplant
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
The Importance of Knowing My ROS1 Mutation: Ashley’s Non-Small Cell Lung Cancer Story
At 38, Ashley was living a healthy, active life, balancing work and motherhood with her two young children. The last thing she expected was a diagnosis of stage 1 ROS+ non-small cell lung cancer in September 2024. Her story is one of self-advocacy, resilience, and the emotional complexities accompanying such life-altering news.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Ashley’s experience was kicked off by the unexpected discovery of a lump on her chest wall in July 2024. Though her primary care doctor and OB-GYN diagnosed it as a lipoma or a benign fatty lump, Ashley trusted her instincts and pushed for further evaluations. A series of tests, including an ultrasound and eventually a CT scan, revealed something more concerning: a lung nodule.
For a brief, terrifying moment, Ashley thought she might have metastatic sarcoma. The emotional whiplash was overwhelming. Relief came when the chest wall mass did turn out benign, but the lung nodule biopsy confirmed stage 1 ROS1 non-small cell lung cancer. She was blindsided. As a nonsmoker with a healthy lifestyle, lung cancer wasn’t even on her radar. The shock was compounded by the fear of what this meant for her young children.
Ashley’s story underscores the importance of self-advocacy in healthcare. Unsatisfied with initial recommendations, she sought second opinions, pushing for genetic testing, which is not standard for early-stage lung cancer patients. This persistence paid off when she discovered she had a ROS1 gene mutation, information critical for her future health monitoring. She also connected with a ROS1 specialist, arming herself with knowledge for proactive care.
Ashley underwent a lobectomy to remove the cancerous part of her lung. Recovery wasn’t easy. She candidly shares the physical pain, the mental toll, and the challenges of balancing healing with motherhood and work. The surgery left her with 30% less lung capacity, which surprisingly didn’t limit her daily activities as much as she feared.
The hardest part of her stage 1 ROS+ non-small cell lung cancer experience? Not the physical recovery, but the effects on her mental health. Ashley grappled with medical PTSD, anxiety, and survivor’s guilt, especially when she became immersed in the lung cancer community and saw others with more advanced stages. She wrestled with her emotions, thinking, “Why me?” as a healthy nonsmoker, and “Why did I get lucky to catch it early when others didn’t?”
Ashley wants others to understand that there’s no need to find a silver lining in cancer. It’s okay to feel sad, fearful, and resentful. She emphasizes the value of simply having people listen without trying to “fix” their emotions.
Watch Ashley’s video and take a deep dive into her stage 1 ROS+ non-small cell lung cancer story:
“I never thought I’d get lung cancer at 38 — especially as a nonsmoker.”
How a benign lump led to Ashley’s life-saving lung cancer diagnosis.
“The hardest part wasn’t the surgery; it was the mental toll afterward.”
Survivor’s guilt: why catching cancer early isn’t always a relief.
The key piece of advice Ashley offers to anyone facing a tough diagnosis.
Name:
Ashley H.
Age at Diagnosis:
38
Diagnosis:
Non-Small Cell Lung Cancer
Mutation:
ROS1
Staging:
Stage 1
Symptom:
No lung cancer-specific symptoms; sudden appearance of lump on chest wall
Treatment:
Surgery: lobectomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Persistent dry cough, shortness of breath, heaviness in the chest, coughing up blood, weight loss, right rib pain, right shoulder pain Treatments: Targeted therapy, chemotherapy, radiation (SBRT)
The Email That Saved My Life: Darla’s Stage 2B Pancreatic Cancer Story
Darla was diagnosed with stage 2 pancreatic cancer (2B) in 2024, a revelation that turned her world upside down. It all began with persistent back pains in 2023, attributed to aging and work-related stress. When stomach discomfort showed up in early 2024, it was chalked up to indigestion. Despite these nagging issues, Darla had no idea her body was hinting at something far more serious.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Surprisingly, a life insurance email offering a free cancer screening became Darla’s unexpected lifeline. Initially skeptical, she eventually took the painless step of a simple blood test. Months later, while enjoying a vacation in Missouri, she received the shocking results: indicators of potential pancreatic or gallbladder cancer. Darla’s instinct led her to push for more tests. They found elevated levels of the fat-digesting enzyme lipase, which can indicate a pancreatic disorder. An MRI confirmed a small tumor in the neck of her pancreas.
Darla’s stage 2B pancreatic cancer diagnosis was a jarring reality check. Initially, all she could think of was death. However, fear transformed into determination. She immersed herself in research, joined support groups, and sought solace in her faith.
Darla underwent several rounds of chemotherapy, which came with intense side effects, from neuropathy to extreme fatigue. When chemo didn’t shrink the tumor, Darla opted for radical antegrade modular pancreatosplenectomy (RAMPS) surgery. The procedure removed the tumor, part of her pancreas, her spleen, gallbladder, and 31 lymph nodes, with only one lymph node showing cancer cells.
Darla’s recovery from stage 2 pancreatic cancer (2B) was tough. Post-surgery, she faced an infection and a bowel obstruction that landed her back in the hospital. But she’s resilient, motivated, and committed to moving forward, despite the mental toll of living in perpetual uncertainty. Her biggest challenge? Planning for the future. She likens it to being stuck in an airport, unable to board the next flight.
What keeps Darla grounded is her faith, which has given her strength when nothing else could. Her experience has fueled her advocacy for proactive health measures. She emphasizes the importance of self-advocacy, mental health, and the need for routine cancer screenings, even without a family history. She urges others not to be complacent. Early detection saved her life, and she believes it can save others, too.
Watch Darla’s video and learn more about:
How a free cancer screening email changed her life
The power of trusting your instincts
Navigating life with stage 2B pancreatic cancer
Why early cancer screenings should be part of routine check-ups
The unseen side of recovery: Darla’s raw account post-cancer treatment
Name:
Darla L.
Age at Diagnosis:
62
Diagnosis:
Pancreatic Cancer (Adenocarcinoma of the Pancreas)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
“Positivity Breeds Acceptance”: Jess’s Crohn’s Disease (IBD) Story
Jess was diagnosed with Crohn’s disease, a kind of inflammatory bowel disease, when she was just eight years old. She began experiencing unexplained stomach pains and a noticeable loss of appetite, even when offered desserts that she loved. A sudden weight loss signaled to her family that something was seriously wrong. After a series of tests, especially with a family history of Crohn’s, the diagnosis was confirmed. Now, 22 years after receiving an ostomy bag, watch Jess’s story.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Initially, Jess managed her condition with standard medications and a highly specific diet — her mom even peeled strawberries to make them safe to eat. Life seemed relatively stable until an unrelated bout of stomach flu sent her health into a downward spiral. Her body couldn’t keep up despite steroids, biologics, and even total parenteral nutrition, a process of delivering nutrients intravenously, skipping the digestive system. Eventually, Jess developed toxic megacolon, a life-threatening complication from her Crohn’s disease that left no option but emergency surgery to remove her colon and part of her small intestine.
Facing ostomy surgery as a teenager was daunting. But Jess vividly recalls the moment her surgeon’s wife, who also had an ostomy, visited her in the hospital. Dressed in stylish black jeans, she challenged Jess to find the ostomy bag, and Jess couldn’t. This encounter shattered the stigma Jess had unknowingly built up, showing her that life with an ostomy could still be full and vibrant.
Recovery wasn’t easy. Jess had to relearn basic functions, from swallowing food to walking. She also navigated the complexities of ostomy care, experimenting with different products to find the perfect fit. Adjusting to a new body image during her teenage years, especially with 2000s fashion trends like low-rise jeans, added another layer of challenge.
But Jess was resilient. By the time she graduated from high school, she had found her confidence, made meaningful friendships, and even taken bold steps in Crohn’s disease advocacy. Her senior PR project on ostomy awareness laid the groundwork for Uncover Ostomy, a campaign that continues to educate and support countless individuals today.
Jess wants everyone to know that positivity breeds acceptance. She believes that approaching life and her ostomy with confidence has not only empowered her but also influenced how others perceive it. Her courage to share her authentic experience has made her a beacon of hope for many facing similar health challenges.
Watch Jess’s video and delve into:
How she found her confidence after life-altering surgery
The unexpected moment that changed Jess’s view on her ostomy
From hospital bed to advocacy: her inspiring Crohn’s disease story
How Jess relearned to eat, walk, and live fully after surgery
The real challenges and triumphs of living with Crohn’s disease
Name:
Jess G.
Age at Diagnosis:
8
Diagnosis:
Crohn’s Disease (a type of inflammatory bowel disease or IBD)
Symptoms:
No appetite even when offered a favorite dessert
Weight loss
Treatments:
Steroids
Blood transfusions
Biologics
Surgeries: colectomy, small bowel resection, colostomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Kelly was diagnosed with stage 4 colon cancer. She reflects on the subtle signs she overlooked — persistent constipation, bloating, and occasional severe abdominal cramps. Like many, she chalked these symptoms up to diet choices and life stress. However, her worsening condition after a recent move pushed her to visit the emergency room. There, a CT scan revealed her diagnosis, and it changed everything.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
When she heard the words, “colon cancer”, Kelly felt like the room collapsed around her. Alone in a new state, miles from family, she faced the overwhelming news head-on. Despite her initial denial, especially about undergoing major surgery and having a temporary colostomy bag, the stark reality was clear: accept the treatment or face life-threatening consequences. That pivotal moment shifted her mindset, igniting a determination to do what was necessary to survive.
Initially diagnosed as stage 2, Kelly had the option to undergo chemotherapy but chose not to, feeling hopeful after her surgery. Unfortunately, a year later, she discovered the cancer had metastasized to her liver, upgrading her diagnosis to stage 4 colon cancer. This news devastated her. Yet, amid the emotional whirlwind, she found out she was eligible for surgery to remove the liver tumors, offering a glimmer of hope.
Kelly’s health journey wasn’t just about cancer. Post-surgery, she battled a severe liver infection that left her physically depleted. Surprisingly, that infection felt more life-threatening than cancer itself. Through relentless fevers, night sweats, and unyielding fatigue, Kelly persevered, leaning on sheer willpower and the support of her loved ones.
Reflecting on her experience, Kelly emphasizes the importance of self-advocacy. She wishes she’d pushed harder when symptoms emerged much earlier, like rectal bleeding, once dismissed by her doctor as a minor issue due to her age. She urges fellow patients to trust their instincts, ask questions, and advocate fiercely for their health.
Today, despite the lingering fears that scans and blood tests bring, Kelly embraces life with renewed passion. She cherishes every moment with her children, finds solace in nature, and seeks out new experiences with an invigorated spirit. While there’s a shadow of uncertainty, she remains hopeful and encourages others not to give up. Kelly’s story is a powerful reminder that even in the face of stage 4 colon cancer, life can still be filled with beauty, growth, and purpose.
Watch Kelly’s video for more on:
How a routine ER visit unveiled her unexpected stage 4 colon cancer diagnosis.
The overlooked symptoms that Kelly wishes she’d paid more attention to.
What’s harder — battling cancer or an unexpected post-surgery infection? She shares her truth.
The emotional toll of living with cancer and why self-advocacy matters.
How Kelly’s love for nature became her therapy amid life’s toughest health battles.
Name:
Kelly C.
Age at Diagnosis:
47
Diagnosis:
Colon Cancer
Staging:
Stage 4
Symptoms:
Constipation
Bloating
Severe abdominal pain
Treatments:
Surgeries: colectomy, colostomy, hepatectomy
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Intermittent appearance of blood in stool; occasional diarrhea; increase in bowel movement frequency; fevers and chills; fatigue; weight loss Treatments: Chemotherapy, surgery
Symptoms: Blood in stool, changes in bowel movements, pencil-thin stool, severe abdominal pain, loss of appetite, rapid weight loss, anemia, fatigue Treatment: Chemotherapy
How Biomarkers and the NanoKnife Offered Elise New Hope in Her Pancreatic Cancer Treatment
When Elise was diagnosed with stage 4 pancreatic cancer in 2012, she never expected to be utilizing emerging pancreatic cancer treatments. Through biomarker testing and a newer procedure called the NanoKnife, Elise found options—and hope. 13 years later, she describes the experience as “a gift in a strange package,” which shows how she found purpose through pain and resilience despite the hardship.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Elise’s symptoms began with persistent pain, indigestion, and unintentional weight loss. After countless doctor visits, a CT scan with contrast revealed a large tumor near her pancreas, confirming the diagnosis of stage 4 pancreatic cancer. Her relentless push for answers underscores the importance of self-advocacy in healthcare.
Elise’s experience also highlights the significant role of genetic and molecular testing, commonly called biomarker testing. She was found to be BRCA2-positive (this is a genetic mutation linked to increased cancer risk). This revelation not only clarified her diagnosis but also opened doors to targeted treatments. She received chemotherapy, radiation, and an innovative procedure called irreversible electroporation, which helped eliminate her tumor.
Through it all, Elise’s positive attitude became her anchor. Her doctor’s encouraging words and approach provided her with the mental strength to face each day. This highlights how crucial a doctor’s words can be in shaping a patient’s mindset. Elise’s faith, family support, and the unwavering belief in hope played key roles in her recovery.
Elise’s stage 4 pancreatic cancer story emphasizes the need for advocacy, the importance of biomarker testing, and the power of optimism. She passionately advises others diagnosed with pancreatic cancer to seek second opinions, advocate for themselves, and never give up hope. As she beautifully puts it, “Hope trumps fear.”
Watch Elise’s video and find out more about:
How numerous doctor visits turned into a miracle in her fight against stage 4 pancreatic cancer.
The simple words from a doctor that transformed Elise’s outlook.
Why biomarker testing can be life-changing for cancer patients.
How her positive attitude and faith fueled her recovery.
The innovative procedure that helped save Elise’s life.
Name:
Elise T.
Age at Diagnosis:
43
Diagnosis:
Pancreatic Cancer
Staging:
Stage 4
Symptoms:
Severe and persistent back and stomach pain
Weight loss
Indigestion
Treatments:
Chemotherapy
Surgery: irreversible electroporation
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
How Stage 4 Synovial Sarcoma Redefined Julie’s Life
Julie’s life took an unexpected turn in 2014 when she was found to have stage 4 synovial sarcoma, a rare kind of soft tissue cancer often starting in joints and tendons but can also be found in the chest. After a car accident in October 2013, she started to experience persistent chest and back pain. Despite clear initial scans, her discomfort grew. One night, the sensation of a heavy weight on her chest after a run earlier that day prompted an ER visit, leading to a life-changing discovery: a mass in her chest.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Naivety shielded Julie from fear at first. Cancer wasn’t on her radar; she thought medicine could fix it. But the words “stage 4 synovial sarcoma” shattered that illusion. The diagnosis process was long, filled with inconclusive biopsies and overwhelming medical jargon. Eventually, she received clarity: an aggressive, rare cancer.
Julie’s treatment began with intensive chemotherapy, which she describes as the hardest experience of her life. The side effects of this treatment were brutal: relentless fatigue, inability to eat, and emotional isolation. She recalls moments of despair, including from the sheer exhaustion of enduring such pain. Yet, voicing that pain became a release, helping her confront her feelings.
After chemo, surgery loomed. Julie’s tumor, once watermelon-sized, had shrunk but was still substantial. Surgeons removed part of her left lung, the phrenic nerve (a nerve that helps control your breathing by moving the diaphragm), and ribs. Recovery tested her patience; frustration brewed as healing felt slow. Breathing with a paralyzed diaphragm and learning to walk again was daunting, underscoring her evolving identity beyond physical abilities.
Radiation followed, surprisingly bringing lightness. Julie experienced hair loss, and as her hair grew back, so did fragments of her self-image. She found humor even in vulnerability — lying on a table, being tattooed for radiation alignment, while techs chatted about raves.
Life post-treatment for stage 4 synovial sarcoma wasn’t linear. Recurrences came, each time shaking but not breaking her. Julie underwent additional surgeries and CyberKnife radiosurgery. Over the years, regular scans became part of her rhythm, now spaced every six months.
Through it all, the message Julie’s eager to share is simple yet profound: find something to laugh about each day. Laughter, she believes, breathes life into moments shadowed by illness. It’s not just a coping mechanism; it’s a testament to resilience. Connection with others who “get it” has been invaluable, offering both understanding and shared humor.
Watch Julie’s video to learn more regarding:
How a car accident unveiled her hidden disease.
The unexpected power of laughter in Julie’s cancer experience.
Why Julie’s toughest battle wasn’t with treatment but with self-identity.
How humor and vulnerability helped her reclaim her life.
From despair to hope: Julie’s authentic take on life after a stage 4 synovial sarcoma diagnosis.
Name:
Julie K.
Age at Diagnosis:
23
Diagnosis:
Synovial Sarcoma
Staging:
Stage 4
Type:
High-Grade, Poorly Differentiated, Spindle Cell
Symptoms:
Chest and back pain after car accident
Trouble breathing
Treatments:
Chemotherapy
Surgeries: lung resection, video-assisted thoracoscopic surgery (VATS), neurectomy, rib removal
Radiation therapy: CyberKnife
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Pain behind left knee, needle-like sensation in left foot Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions) ...
